MY STORY
How did I get Chronic Kidney Disease, and why do I need a new kidney?
In the summer of 2018, before my senior year of high-school, I began experiencing extreme fatigue, feeling nauseated, and had high blood pressure. Suddenly, at 17 years old, I couldn’t get through a full day without a nap. This impacted my social life greatly because I never had enough energy to go out with my friends.
On October 14, 2018, the day after my 18th birthday, little red dots appeared on my legs. Tests were run, but everything came back normal. On and off throughout December I had 100 plus degree fevers and increasing red dots. On December 26th, I was admitted to the hospital. I had 12% kidney function and was diagnosed with three types of kidney diseases, Necrotizing Glomerulonephritis, Crescentic IgA Nephropathy, and IgA Vasculitis (HSP- or Henoch-Schönlein Purpura). Two options were given: intravenous cyclophosphamide (A chemotherapy drug typically used for patients with Leukemia) or dialysis. Doctors advised against dialysis and believed chemotherapy would preserve my native kidney function.
In the months following my diagnoses, I had a port implant placed in my chest for intravenous chemotherapy. I had bi-weekly blood draws, kidney biopsies, and more medications than I could count. I was given injections to put my reproductive organs into menopause to try to preserve my fertility. This is when it really started to sink in what was happening. I returned to school part time, and luckily was able to do most schoolwork online. I wanted to finish my senior year in person with my peers. I finished high school and attended graduation in person, which was a huge goal of mine. My kidney function was almost back up to 50% for the next three years.
In July 2022, I was accepted to Columbia University in New York. I moved there in August and started fall semester. With this move, I had to establish care with a new nephrologist, who chose to change my medication regimen. This caused many adverse affects. After midterms, I was on the subway home from school when I passed out. Fortunately, another passenger called 911 and stayed with me until paramedics arrived. In the hospital, I was informed that my kidney function was back down to 35%. This event was incredibly scary to handle alone, so I decided it was best to move back to Oregon to be with my family and the care team I trusted.
I moved back home Thanksgiving, 2022, and since then my kidney function has slowly declined. In March of 2024, my kidney function dropped to 18%, and by July 2024, I was placed on the transplant list. I have continued working, designing kitchens, which I love. In my free time I love crafting, golfing, and traveling. Disneyland is my favorite place to travel because it lets me forget about the outside world for a few days. I am fortunate enough to have the loving support of my family and friends.
My surgery team and I really hope to find a living donor before dialysis is needed, otherwise it could be upwards of seven years before I receive a transplant. As of right now, I have zero antibodies, and I am in the top 1% of healthiest patients on their list, making me an ideal candidate for transplant.
Thank you so much for taking the time to read about my story!